Diagnosis Day – Five years later

On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger.

The last five years have been the most difficult in my life. I’ve watched my daughter lose skills, regress, have seizures, need CPR and be hospitalized. That has been her life, at least that is what Rett has done to her.

At the same time, she has fought for her lost skills. She has pushed herself mentally and also physically. She has overcome relentless side effects of many medications. She has screamed in agony, squealed triumphantly and shown strength, immeasurably. She wakes up every morning with a smile, in the hopes that today will be better.

She has had five more birthdays.

She endures. She fights. She inspires. She is beyond brave.

There are days, weeks, and months that are unrelenting. She gets knocked down, she gets up. She is fighting Rett Syndrome like she is Ronda Rousey. I’m just her trainer on the sidelines. I wish I could just tag her out and take her place, but I can’t. All I can do is help her, give her strength, give her love and be her voice.